PCS What to do next?

[halinbath]

Eighteen months now since I was hit by a sliding train door and still not feeling right. Apart from the usual problems of extreme fatigue, mood swings, poor memory etc I now have endless jaw clicking, problem swallowing, ear ringing and blurred vision with floaters. The CT scan was normal as expected but I need a plan to move forward. I finally got an assessment by a clinical neuropsychologist who says that he suspects my reported difficulties and performance on testing are largely due to post concussion syndrome, although he says it is unusual for symptoms to persist for more than 12 months post injury. He thinks it is likely that my pre-injury issues with anxiety are contributing to my difficulties. Not sure where this leaves me health wise or in relation to my claim against the train company. I am wondering if I should ask my GP if it is possible to have an upright MRI scan at the Medserena centre or upright MRI centre in London? Anyone know if a GP can request funding for this? I could pay myself if it would help my claim and my diagnosis. Feels like PCS is not understood and if it persists they simply think it must be due to an existing condition that is preventing recovery? Any guidance would be appreciated, feel stuck right now and need to put a plan in place that would at least give me some hope of sorting things out.

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Some dentists specialise in jaw problems. See if you can see one to make sure your jaw hasn't been affected.

[kjharvey]

What you should request is a DTI (diffusion-weighted magnetic imaging scan) or fMRI (functional MRI). There is also a series of tests you can have done by a neurophyschologist that will tell you exactly which areas of your brain have been affected. This is helpful since the diagnosis of post concussion syndrome basically means that they don't know what's wrong with you and they are pretty sure you are manifesting your symptoms yourself and the treatment is dependent on symptomology and seeing a shrink. That was my diagnosis until I had the series of tests done and my diagnosis changed to closed head injury after there was proof of the damage. This will also help your case against the train people. I have to go through my records, but I will get you the name of the tests.

Hope this helps.

K.J.

[halinbath in reply to kjharvey]

Thanks so much, that is really helpful.

[halinbath in reply to kjharvey]

K J do you think a fMRI is what is needed to show proof of the damage? Getting no help from GP's. solicitors, neuropsychologists so will book a private MRI I think. Some people say an upright MRI is best others fMRI? My neuropsychologist did a comprehensive cognition assessment lasting nearly all day but when it came to reaching a conclusion he just vaguely came up with PCS !! Maybe a different neuropsychologist looking at the results may have a better understanding. The UK seems to be behind the US when it comes to concussion and PCS etc.

[kjharvey in reply to halinbath]

My neuropsych doc recommended one for me, but my GP wouldn't order me one. Ask your neuropsych for an in-depth copy of the test you completed. Mine was a 3 day process. The fMRI is supposed to be able to detect micro tears or shearing in the deep part of the white matter. I was so taken aback by the refusal to allow this for me. Especially since my initial MRI wasn't until 2 weeks post accident because my hospital records show they never scanned my brain just my neck for fractures and if I remember right, they let me walk out and drive home saying I did not have a concussion and just sprained my neck. So, I wouldn't think to highly of the medical system in the US. I quit going to doctors and am treating myself at home. Some days it sucks, some days it's good. So, to answer your question after my long diatribe, yes, I would recommend the fMRI. Functional MRI (fMRI) can illustrate how certain types of tasks activate the brain, but cannot yet tell us that an individual has a verbal memory problem involving retrieval but not encoding. Ok, so as I'm looking at my test there were a lot of tests that I did those 3 days. Adult neuropsychology questionnaire, Aphasia screening, Beck anxiety inventory, Beck depression inventory, clock drawing, Boston naming, California verbal learning test 2, Conner's continuous performance test, Delis-Kaplan executive functioning system, functional activities questionnaire, grooved pegboard, Minnesota multiphasic personality inventory, neurobehavioral functional inventory, outcome questionnaire, Rey complex figure test, Rey 15 item memory test, symbol digit modalities test, verbal fluency, wechsler intelligence scale for adults 4th edition, wechsler memory scale 4th edition, and the Wisconsin card sorting test. I don't know if you have access to all of those but it's a good idea to try and see if you could get some of those done if you haven't already. I hope that helps, I'm sorry I know it's a lot of information.

[halinbath in reply to kjharvey]

Thanks it really does.

[kjharvey]

I've been in the medical field 19yrs, and though I am unable to continue what I did before, I still have the knowledge and experience and am happy to share if it helps someone. Always around if you need to chat.

[Lizum]

I’m in a similar position. I’m not convinced that the symptoms I’m experiencing are due to pre-existing depression. I’ve been through some bad times and these symptoms are different. I have headaches in places I’d not had them before and whilst I had fatigue before I’d rate it a 3/10. Now it can be 11/10! I’m seeing a psychiatrist soon for my income protection insurance so it’ll be interesting to see what they say.y neuropsychological test came back normal.